TTC/ pregnancy on Prednisolone or similar

[freelancegirl]

I am not sure there are enough people here to start a thread but have been chatting on one on the pregnancy boards and was wondering if I could find any fellow ttc'ers on Prednisolone or similar?

I have just received a diagnosis of very high NK cells. It was a bit of a shock actually as it turns out I have some of the highest levels - 3.79 when anything over 1.8 is considered 'very high'.

Am trawling through Dr Beer's book and Dr Google and trying to found out more. I have been recommended 25mg prednisoline steroids for two weeks starting with ovulation, increasing to 40mg if/when BFP and then Intralipids Cyclogest too. I still have 13 days until I pop my first Pred.

There now just seem like so many hurdles - actually getting pregnant being the first one. I was prepared for high NK cells as I have high thyroid antibodies but it was shocking to be in the top 5% of people treated at the clinic. I am not sure if that gives me much less of a chance of being successful.

It would be great to hear from anyone else who is undergoing treatment and of course also if you've had successful treatment.

It's being discussed on the Jeremy Vine show on Radio 2 at the moment ... they have someone in talking about it, didn't catch who it is though.

Woohoo ... free, you're on the radio!!! :)

ITV and BBC (radio) in one half hour, that's good going :)

fere just caught you on the telebox (well, live stream at work). Well done lady, you came across very well!!! Just off to read the article now.

er, I meant free not fere

Great presentation free, what a professional you are ;) Seriously, very well done, I know it's a very personal thing to have to go in front of the nation and discuss, but you did it with style. Well done

good well balanced article too.

free I know every experience is personal but I really feel like you're representing all of us out there. And you're doing an amazing job of it. Thank you. It was good that ITV touched on the 3 rmc's rule too - I don't think anyone knows that till they go through it.

am so behind...good luck today iggi let us know how it goes.

And welcome suemays - I found charting my temps to be very useful when trynig to pinpoint ovulation (I have long irregular cycles). If only to know when to expect my period. No point testing if you haven't even ovulated yet. I charted using Fertility Friend which also has plenty of tutorials to help you understand how to get started. It may take a couple of cycles to work out your pre-and post-ovulatory temp range - but once you get the hang of it it takes all the guess work out of knowing when to test (which I think is important if you're supposed to be taking steroids from ovulation).

free caught you on the news. Thought you came accross very well. It must have been nerve wracking but well done you!

Ahh, thanks so much everyone, I really appreciate it. Glad it came across ok and hope I did manage to represent all of us. Would love to write more but am on mobile and in up sushi before a meeting so will have to do so later xx

Still hanging on - measuring ok (a couple of days behind I would say) and heartbeat of 154. Good I hope?

iggi Mr S always measured me 1-2 days behind compared to my St Marys scans, so I wouldn't worry about that. Good strong hb - it's good news! Are you relieved? How far along are you now?

Thanks Digi, that's reasurring. I'll just be 7 weeks tomorrow. Further than 2 of my mc though, not as far as other 2 got. I still have this frame of mind where I just think, if it has to go wrong, please let it go wrong quickly, so I don't get any more attached.
I'm an ungrateful bugger, aren't I?!
Got dh to tape Free's lunchtime appearance, so will watch that when I get home (in 6 hours!)

Dear all - I'm useless at posting on here but do read through to keep updated with how everyone is but tonight thought I might have something useful to add!
Freelance - my sister is on the drug you mentioned - she takes it for an autoimmune problem but she says that she has no side effects from it so hopefully it will be ok for you.

Sue - I stayed on the pred for 17 days the first time I took it thinking that I was covering all bases but when I stopped I felt really ill for nearly a week - mr S said it was because I had taken them for too long so do take care.

I found out I was pregnant two weeks ago (seventh time but first on treatment) and am on the very high treatment prog. 2.8. Not feeling very positive as have been spotting all weekend and have pain on lower left side. Saw GP today but was told either could go and sit in a and e at a hospital quite a distance away (where my son died) or wait for early pregnancy clinic tomorrow - have opted to wait until tomorrow!

My gut instinct is that if I kept going with mr S it would happen eventually but I think am now ready to call it a day if tomorrow is bad news - as previous people have said sometimes there is a time for stopping. anyway we shall see ...

Hi Sue - symptoms haven't been too bad on them - very similar to everyone else - muddled! / sometimes feel very hot / insomnia + have really noticed appetite increase now I'm on the 40 mg and sometimes get a strange ache down the back of my neck but coming off them I felt very bad with headaches and nausea. With the benefit of hindsight I should have taken them for fewer days or weaned off. This is my first time being treated by Mr S. I have been seen by St marys and tried most things then nearly stopped after the last pregnancy turned out to be a molar one but thought would give it one last go with mr S. Thank you for the good wishes will let you know how tomorrow goes.

Hi Comedy,
Not sure if you saw my earlier messages but Dr S told me that my first cycle on the preds would be a dummy run as I think having v high killer cells can be harder to pinpoint which combination of treatment to give. I am almost expecting to have another miscarriage when I do fall pregnant. It might be worthwhile considering that if this is another miscarriage for you (fingers crossed it's not) he can change the plan to suit you for next time. Will be thinking of you tomorrow xx

Freelance ? I didn?t catch your news appearance but saw you in the Independent. Well done you!! I didn?t scroll down to read all the comments as I didn?t feel like I could face those ignorant people.

Iggi ? So glad the scan was good news. It?s still impossible to relax though, isn?t it.

Comedy ? Really good luck tomorrow. I?ve got everything crossed for you.

Welcome to Suemays! I?ve only found this thread recently too but it?s been a godsend for me. It?s so nice to be in a lovely group where people understand how you actually feel. I also found fertility friend really good if you do decide to go down the charting route.

Digital ? I hope you?re enjoying spending time with your mum. It must be hard to put your mind to TTC when you?ve got so much going on.

Arianrhod ? I had a positive test at 9DPO with ds, and then one at 10 DPO that turned out to be a blighted ovum (discovered at 10 weeks). I have also found that later BFPs turned into early mcs (5 and 6 weeks). I didn?t test until after my period was due this time round (I hadn?t seen Mr S then) as we were on holiday and I didn?t want to obsess while we were having a nice time so I?ve no idea whether this one would have been an early BFP or not.

Well I had an appointment with Mr S this afternoon too. The scan was all good ? 9w6d and a good heartbeat, and the blood clot has reduced in size. Mr S says he?s feeling very confident about it all. I?ve got to start reducing the pred by one tablet a day from tomorrow. My repeat lupus anticoagulant test, which had been borderline before, came back negative so he is now saying that I can stop the Clexane at 12 weeks. It?s ridiculous I know, as I hate doing the injections, but it feels a bit scary to stop them altogether. He said he thinks my sticky blood issue is a bit of a red herring, as I inherited the condition so have therefore had it all my life and have managed to have one successful pregnancy. Still feels like a bit of a comfort blanket though.

Ooh Freelance - Just seen that Sue has linked to your news appearance. Off to check it out now?

I have been lurking all day and just wanted to say great news Iggi for the scan. I would love to tell you to cheer the hell up and that it will all be positive but I know that if I were you I would be just as worried too. On the flip side there is every reason to be positive and you can worry all you like - it won't change the outcome. So maybe feeling a bit positive every now and again is allowed too..? Don't worry if you can't though, like I said it can't change the outcome. Do what ever you feel and just hold on for the next few weeks xx

Coconut great news on your scan too! See, we are having a good run of luck at the moment everyone.

Comedy good luck honey with everything tomorrow. We are here for you so do come and talk when you can! I think you made the right decision to wait until tomorrow. And I am hearing so many stories these days about being getting pain and bleeding and it all being fine.

Sue I don't know about anything with the HPV virus but I have had treatment for pre-cancerous cells too (severe dyskariosis if i remember rightly but can't quite spell it). I also used to get a lot of infections but I think they were thyroid related as it can cause, well just about everything. Funny, I don't seem to get them anymore. Killer cells maybe...?

Digi, battery, Kittens and everyone thank you so much for the nice comments about today. It was a long day (I was at the BBC at 7pm still doing a pre-rec for the World Service for tomorrow!) but I hope we managed to get the message out to a lot of people. I seem to have had a flood of response from people on my facebook page so I am well and truly out of the miscarriage closet with people I know or who know me. Feels a bit weird, it was good to have support but I also want them to move on now and it to be yesterday's news until the next time.

And after all that I am exhausted and have three long days of work coming up (I know! I have to leave the house and everything...) so that's it from me for this evening. Hope I haven't missed anything vital.

Thank you for your support - will let you know later how the scan goes. Reading through what everybody is saying this thread seems to be having a good success rate!

Morning young ladies,

Comedy just wanted to say good luck today

Congrats to Coconut & Iggi on your scans!!! I am opting for denial at the moment until my first scan on the 17th. Seems like an age away. I should be 6+4 ish by then.

Free - You were awesome yesterday. We caught you on the news and radio. You came across brilliantly. Thank you for representing us and giving us a voice.

Digi - How is your Mum doing, and how are you?

Waves to Euro, Battery & Kittens, hope all of you are in fine fettle.

We have only known we are up duff for a couple of weeks now but it feels like forever. Finding the Crinone ok, relieved that I am taking it this time round. At St Mary's they would never give me progesterone despite my history. Clexane is not as bad as I thought, am used to injecting now. Steroids are interesting though :). House has never been so clean and DH so looked after. The lack of sleep however is starting to take its toll, result is incoherence, burble and general inability to string sentence together much to DH amusement. Have been told to up my thyroxine by 25mg so up to 75 now. Is anyone taking aspirin as well? Just wondering why I wasn't given that.

May this be a good week for us all x x

Morning ladies /waves to all , hope everyone's in fine fettle this damp and yukky morning? (well it is around here, anyway)

Excellent news about the scan coconut, how did we get our Mr S appts out of sync? I see him for follow-up-after-first-steroids on Monday. Brilliant to hear such a great scan!

Comedy best of luck for today, hope all goes well. I'm told spotting in early pregnancy is fairly common, so fingers crossed!

Brownie you make me laugh every time I see the "up the duff" comment. Fabulous term, I love it! :) And I'd agree with your choice of "interesting" for the steroid effect ... I was ironing till late last night (ugh), and the house is definitely tidier. Mind you, that might also be because DP is away for a few days on his annual surfing-with-the-lads trip (bunch of 49 year olds, you think they'd know better!) and somehow the place is always calmer and tidier when he's not there! :)

Mr S only told me to take aspirin as I have the MTHFR C677T mutation apparently, said it wasn't needed for anything else as I didn't test positive for any of the other clotting issues. Although I'm slightly worried, as I've seen ladies with the same mutation being told to take heparin instead of aspirin - that's quite a bit stronger, right? So why am I only taking aspirin? Plus high-dose folic acid, for the same thing - but reading more into this mutation, apparently the problem is I can't metabolise folic acid, so just chucking more of the same stuff at me doesn't appear to be sensible? In the US they are saying now that for this mutation you should be taking a methylated version, methylated folate, that your body can absorb when it can't handle the unmethylated version - which is the case with this mutation. So I have an extra double worry there - is the MTHFR mutation being treated at all, in effect?

Aarrgghh This is all enough to do your head in, right? As if we didn't have enough to worry about, trying to figure out whether you're being medicated appropriately for your newly-found conditions while coping with the side effects of what we are now taking. Drives me slightly bonkers (although some would say I am bonkers anyway :) ).

Here goes ....
Welcome sue xxx
Yey Iggi !!x
Good luck comedy xx
And finally massive Congrats and well done to u free, ur awesome to speak out like that and u represented all of us brilliantly, well done you !! X

Hi to everyone else ?

Sorry for the short post about to go on a boring tax course for the afternoon so could literally be aslep in 30 mins ?? X

Oh and Congrats coconut, sorry Hun xx?

Hi ladies am counting down to my dating/nuchal scan at 3.20 this afternoon. It's at my local hospital so fully expecting them to be running late. Leaving work in an hour.

comedy good luck with your scan too. I know it's no consolation but I spotted a lot in my pregnancy with DS. No reason ever given for it, but was terrifying at times. I hope you get some reassurance today.

brownie and coconuts I think you might mean kittens who is visiting her mother in France. I am fine by the way! Brownie - perhaps because you are on clexane you don't need to take aspirin as it is much more effective at thinning the blood than aspirin. I've been told to take aspirin till 20 weeks and I never tested positive for any thrombolphilias.

coconuts yay for good scan! So you're 10 weeks today! That's brilliant! Double figures! And despite you losing your comfort blanket it really is good news that you can come off the clexane. I can't bloody wait to stop popping the progesterone...

Glad to hear I'm not the only one who was doing various housework related activity at midnight whilst high on the roids .

I was out with a small group of girlfriends last night - who all know my history. Finally outed myself to the last one, still feels weird when people say congratulations. But it was lovely to be able to talk about it more positively and they were relishing being able to give me advice about having a second child rather than sympathetic platitudes about 'itll happen eventually'. So it seems the cloud has lifted.